>You Know You’ve Got CP When…

>…You arrive at your parents house Christmas morning to find your wheelchair waiting by the front door. And discover that the reason your Christmas Stocking (or shiny purple gift bag in this case) wasn’t in the traditional end of the bed position wasn’t because you live alone but because what better place for a crip’s gifts than their wheelchair?

Also: you know you have a Christmas Day birthday when it gets to mid morning before people go “oh yeah, Happy Birthday!”

And finally you know it’s Christmas at my parents house when you’re asked to help peel the potatoes. Only 11lbs worth for four of you. And you know you’ve got CP when helping ends with you absolutely covered in peelings.

>Christmas Eve

>Christmas Eve this year was celebrated by me, my parents and my sister.

First there was a lot of food. Including a baked ham that Soph and I agreed was about the size of an actual pigs head.

Then there were games. Starting with the traditional for my family Christmas unearthing of the Mancala board. I love that game, no idea why we don’t have it put more often.

We moved on to Trivial Pursuits. Some of the questions were familiar as we’d played it two weeks before for my birthday but it was still a game filled with laughter and fun. In fact the whole evening was. All four of us had forum cheeses in our piece when we called it quits. I don’t think I’ve ever actually finished a game of Trivial Pursuits.

And all around that there was a very tired Milo wandering. Until he fell asleep on the lounge floor all snuggled in and looking like a puppy half his age.

>Christmas Wishes

>I’ve been pretty absent from this blog lately. I have big things planned for 2012. Partially it’s the old new year thing. But I do also think my impending 30th birthday has a part to play (26 hours left of being a 20 something!).

I’ve been through a lot this year and who I am has changed as a result. Part of my plans for the new year is some changes to this blog to better reflect that.

But for now I want to thank everyone for reading, sharing, subscribing and commenting. And for all the support, friendship and even love that has been sent my way. I’m not always good at acknowledging that but I do really appreciate it and I hope everyone knows that.

Im hoping that everyone reading this has a very Merry Christmas full of love, warmth, laughter, too much food, people that you care about, relaxation, the odd tipple or two and some truly rubbish TV. And without the traditional arguments, disasters and the things that seem a nightmare at the time and soon become “it could be worse” anecdotes you laugh over in the future.

Much love and best wishes to all, Emma Xxx

>Link Fest #1

>A few things that have me think, laugh, smile, cry etc lately. Or otherwise need to share

One teachers approach to preventing gender bullying in the classroom ~ whilst specifically about gender it’s a beautiful post with ideas that could be used to embrace differences of any sort.

What the barber said ~ I go through phases when I read Dave Hingsburger’s blog everyday and then don’t for several months. This post about kindness and the impression we make on others is one of the reasons I like to read it.

The very definition of irony ~ this post by Sue Marsh details her conditions and shares the fact that she’s been refused DLA. It’s been receiving a lot of attention both online and in the media because it’s so shocking. Apparently. I’m not shocked. The point that seems to be being missed in my opinion is that this isn’t one person being refused, something that could be considered an anomaly or a mistake. This is happening to hundreds of people every week who are just as deserving as Sue. But who might not have the power or ability to fight it. Because its all they can do to survive. And, sadly, for some of those turned down they can’t even survive once they lose their DLA or other benefits meaning that suicide could be their only option.

DLA? Denied. ~ post on Where’s The Benefit? Explaining how Sue’s situation isn’t unique and giving the relevant facts and figures.

Pat’s Petition. ~ Any petition on the governments e-petitions site which gets over 100K signatures will be automatically debated by parliament. This petition, set up by Pat Onions, who is both disabled and also a carer is trying to get the welfare reform bill paused for reflection. There’s a long way to go to get that 100K but it’s a very worthy cause.

Grifting vs gifting ~ I don’t know the tweeter used in the example here but it’s a very important reminder that people aren’t always who they seem to be online at to be careful. I’d add in the need to be careful with what information you share too.

~ An incredible film about an incredible day ~ I’m a big supporter of organ donation. I’m sharing this more for the video in it than anything. It’s such a lovely video and a brilliant achievement. I rarely cry at blogs, tv etc but did shed a tear or two watching that.

What is quality of life really? ~ an important reminder about perseverance and attitude and the role they play in life.

~ Pregnancy with a physical disability: one psychologists journey ~ OK so I couldn’t relate to the specific pregnancy related parts but the bits about needing to teach people that disability isn’t a tragedy and not to make assumptions as to limitations are things I regularly experience. Plus, the rest of it was interesting.

Writing my own story ~ definitely a useful reminder for me and something I need to practice more.

>A few writing thoughts

>I can’t remember if I shared this already but by the end of November I was still loving the writing but I was just done with the project I was working on. Totally bored of it. Talking to others who did NaNo that seemed to be pretty normal thing. I’d probably go as far as to say its an expected part of the nanowrimo process. But that said I don’t remember it being as hard in years gone by. I did have several instances of life kicking me in the teeth in other ways during the month though.

Two weeks later however I’m finding that I’m really missing the writing. I can go many months without doing a lot of writing but this year the habit seems to be sticking much more. I’m absolutely itching to do some real writing and I can’t wait to find another completely free day and dedicate it to my craft. Sadly that’s not likely to be very soon.

My writing is going to be my big thing in 2012 I think. Or at least I hope so.

>Lord of the Lightning by David Butler

>One of my blog readers and fellow CPer, Becky, sent me an email asking if I’d like to review her Dad’s new book. And not being one to turn down free books (and because it sounded good) I said yes. The book is Lord of the Lightning by David Butler

Here is the synopsis
The poet Homer says the Greek gods made androids, replica humans able to speak and move and think. Consider that…

The ancient Greek gods, Zeus and the rest, weren’t gods at all. They were aliens, travellers in space and time, who chanced upon planet Earth when their vehicle broke down. We were a handy emergency stop. Their technology was taken for divine magic so they were taken for gods.

Earth was a disappointment. The science the Olympians needed to mend their vehicle was unknown to the ancient Greeks. And the Olympians were falling sick. So they entered suspended animation.

In 1996 they awoke. Now they’ve done a deal with a global tycoon. Fix the ship, cure the illnesses and the Olympians will depart, leaving the tycoon equipped with the same technology the Greeks mistook for divine power.

Planet Earth may fall under the dictatorship of a single business leader, Malvol. If some of the Olympians have their way, worse fates may await humanity, including the theft of the planet. An alien shape-shifter named Demogorgon has equally menacing plans.

Leadership in the battle to save the human race falls by chance to an unemployed journalist, an American professor, a female aboriginal Australian diplomat, a quartet of first year university students led by a young woman in a wheelchair – oh yes, and a hyper-intelligent Siamese cat whose interests include geometry and Latin poetry. Can Earth be saved?

There was something about this that just kept me reading. It had hints of sci fi enough to keep me happy but not so much to put off someone who wasn’t a fan. There was quite a lot of Greek mythology in it an area I know little or nothing about. However it wasn’t overwhelming and for the most part was explained without making it boring or you feel like the author was talking down to you.

I especially loved the plot with Leo the cat, which not being a cat fan (they freak me out) I hadn’t expected.

Another aspect that was very good was the way disability is handled. It’s not hidden away or brushed aside. Nor is the point that Penelope is disabled shoved down your throat. It’s just a part of who she is along with many other things. Once or twice her disability was used to describe her when I didn’t think it needed to be though. I have a feeling there are a lot of autobiographical elements to the characters of Penelope and her parents and would be interested to know how much that is so.

I’m glad I read this book and if there’s a sequel I’d want to read it.

>Festive Fragment Fun

>Three mosaics I made at a Festive Fragments workshop on Saturday. The first is a star (using shiny red blue and green tiles for the most part) the second a moon (I used a lot of ceramic/china pieces for it) and the third a bird (lots of different textures in this including a couple of very large beads and yarn round the edges)

I think I might turn them into a mobile. Each has a ribbon for hanging them up so it should be relatively easy. I have a flower I made at the workshop last year I can add as well.

I’m not sure which I’d call my favourite, each is very different. But the tutor said the bird was her favourite of everything made in the workshop and she made everyone stop and look at it. That made me grin.

>Details on my new seating

>Two weeks ago I went to Wheelchair Services for a new assessment. Two very productive hours later I left with a completely pimped chair and all new seating.

And it was so easy.  I didn’t have to fight for anything and didn’t need to argue my case at all – the therapist simply saw me and talked to me and made suggestions.  That was so different to my last assessment where I thought I was constantly having to push for things (and where I didn’t get what I needed looking back).  I’d actually made my Dad take the afternoon off work to take me so I had back up – and had given him strict instructions as to what we needed to get a definite answer to etc etc.  Turns out I could have gone by myself.  But it was absolutely lovely to get there just the right amount of early and to leave as soon as the appointment was over – and that the only stops on the way home were the ones we wanted to make.  I’m very grateful for hospital transport but it does make for a very long faffy day usually!

The first thing she did was give me a new wheelchair cushion.  It’s a jay2 and she added an insert to the left side to level out my hips (my left hip was previously lower than the right). This led to the discovery that the curve in my spine is high up and with level hips, my shoulders aren’t level.  Nothing can be done about that.  She also added a pommel to the front of the cushion to help me keep my legs/knees apart.

The cushion is so high that I then needed my footplates raising.  And if I’m honest in the past two weeks I’ve found they weren’t raised high enough – must get my dad to shove them up a bit more.  I know how to do it but I need to be sat in the chair to make it work and that’s not going to happen if I try!

The frame of my chair needed to be dropped lower on the wheels (or the wheels were changed to a higher position on the chair, more likely). That was to make it easier for me to reach the wheels and push myself.  With the new cushion I felt like I could reach but it wasn’t as easy – I had to reach down rather than putting my hands there and they were in exactly the right place.  It then became obvious that my casters needed repositioning as moving the wheels had left me with a very bucketed seat which isn’t right for me.  We won’t talk about the amount of yarn and other crap she pulled out of the workings when she took them off to move them.  I knew there was a load there but I hadn’t realised it was that much.  Cue the OT commenting that that might be why it wasn’t very manueverable. In an amused kinda way.

In terms of the backrest of my chair (I already had a jay3 backrest) laterals were added.  I pretty much knew that I needed laterals but had anticipated that this would be where the problem and the needing to fight would be.  This was due to the fact that all the physios I saw over the summer (and the fact that serial casting requires two people meant there were a lot) tended to follow up remarks about the lack of support my chair gave me with a comment as to my lack of arm rests.  But as I finally pointed out to them, arm rests do not give support on your sides and as that was what they were talking about my lack of arm rests was irrelevant.  The physio in question agreed with me about that but it had made me apprehensive about the discussion when I got to wheelchair services.  I need not have been because there was never any question of my not having laterals and arm rests didn’t get mentioned at all.

The laterals in question are swing away ones.  They have a catch to move them out of the way as needed.  I’ve also found that they move if I deliberately lean to one side (to reach something) although not as easily.  I’m not sure if that’s meant to be the case with swing away laterals or not.  It’s a little annoying if I’m honest but I could see it as something that’s meant to happen.  Possibly to stop people hurting themselves but also as a memory prompt – if it moves when I’m not deliberately reaching over then I realise that I’m tipping to one side (the left almost always) and can right myself.  I like them, they help a lot and they are really inobtrusive, hardly noticable at all.

The final thing that was done to my chair (for now) was the addition of a spine align kit.  This amuses me because it sounds all high tech and complicated and like some sort of painful metal frame.  But it’s two foam wedges with velcro on them placed between the plastic shell of the backrest and it’s cushion.  These help the cushion mold to the shape of my back more and make it more comfortable.

In a few weeks I will be getting something fitted to my footplates which might stop my legs going into extension when I wheel.  I’ll believe that when I see it (it working I mean) but I’m willing to try it.  I think they’re called Skate Shoes but googling can’t find them.  It’s something shoes anyway.  They are screwed on top of footplates and you put your foot/shoe in them and they’re shoe shaped.  Usually people have them to stop their feet slipping backwards off of the footplate.  I’m having a cut down version (hence the delay) put on the wrong way round in an attempt to stop my legs going forwards.  I very briefly tried a calf strap but as I told the OT it hadn’t in the past it didn’t work. (she believed me but had asked me to try it so she could see what happens)

The fact that these are called something shoes was a cause of (slight) amusement as we were leaving the hospital when my Dad said he didn’t think it would work as I have enough trouble putting shoes on and wouldn’t be able to put these things on too.

At the moment I’m not getting a new chair but there is a brief possibility I might find I need one.  The one that was discussed very briefly was XLT by Invacare which is a rigid chair and looks great.  Altering my seating and giving me a new chair at the same time wasn’t thought to be a good idea as it would make troubleshooting any problems doubly complicated.  As much as I would like a new chair… I’m thinking it probably won’t prove to be necessary. Sadly.

I’m loving my new seating but still getting used to it really.  I did find the fact that the chair I have (an Invacare Action 3) retails for £495 and the seating I have (a jay2 cushion and a jay3 backrest with laterals) retails for over £800 a little hard to get my head around but there you have it.

>Miracle on Regent Street by Ali Harris

>Simon and Schuster very kindly gave me a copy of Miracle on Regent Street by Ali Harris to review.

Here’s the synopsis:
Dreams can come true – it could happen to you…For the past two years, Evie Taylor has lived an invisible existence in London, a city she hoped would bring sparkle to her life. But all that is about to change. For winter has brought a flurry of snow and unexpected possibilities. Hidden away in the basement of Hardy’s – once London’s most elegant department store – Evie manages the stockroom of a shop whose glory days have long since passed. When Evie overhears that Hardy’s is at risk of being sold, she secretly hatches a plan. If she can reverse the store’s fortunes by December 26th – three weeks away – and transform it into a magical destination once again, she might just be able to save it. But she’s going to need every ounce of talent and determination she has. In fact, she’s going to need a miracle.

I loved this book.  It’s so feel good and Christmassy and just brilliant.  I actually finished it about a month ago (review writing delayed by NaNoWriMo consuming me for the entirity of November amongst other things) and am giving serious consideration to reading it again to help get into the Christmas spirit right about now.  I could use a little Christmas spirit I think.
To start with I just wanted to scream at Evie to grow up and stand up for herself.  But then as the book continues it becomes all the more obvious why she is how she is and all the more understandable too.  As someone whose disability often makes her invisible I could relate to Evie’s problem with not being known for who she is and often being ignored.  And I could recognise a lot of a younger, less confident me.  I wish my own journey to increased confidence and losing (some of) my invisibility had been as fun and rewarding in the end as Evie’s was in this book.  I think this shows just how believable and well written the characters in this book are.
If you like books which you have to work to enjoy and which make you think, this may not be the book for you.  I found it did make me think as I said above but it’s definitely more of a fun read than a literary or education read.  That’s not to say it was predictable or formulaic or anything like that because it wasn’t.  It’s chicklit, yes, but it’s chicklit at it’s best.  This reminded me of Marian Keyes at her strongest. Miracle on Regent Street is Ali Harris’s first novel and I predict it won’t be her last.  I’ll certainly be watching out for more by her.

It’s totally perfect for a cold evening snuggled under the duvet or on the sofa – preferably with a hot chocolate.  And it’s the sort of book I would love to find in my Christmas stocking on the big day.  It’s that good.

>December Goals

>Take my meds every day (seriously my med compliance has been absolutely atrocious lately. And no suprise, my mood is appalling as a result. Surprisingly my spasticity hasn’t gone as crazy as it used to with not meds).

Continue my one better choice a day plan I’ve been working on.

Finish some damn knitting.  (honestly I don’t think I’ve finished a single knitting project this year :-O)

No more ridiculous chocolate binges (I ate a totally ridiculous amount today and don’t know how I wasn’t sick).

15 mins on the house each day.

Catch up on book reviews

Exercise a couple of times a week.